Links between early menopause and medical treatment: Women’s accounts

So this is when I was in my early 20s, and I was diagnosed with endometriosis. I had severe endometriosis; not only on my ovaries and my pouch of Douglas, but also on my bowel, my bladder and the lining of my stomach. So it was fairly extensive. So I had that removed and I was good.

The pain had decreased for a couple of months and then it would just come back again. So it was incredibly frustrating. Tried a number of different medical options, so a range of drug options, drug therapies as well further laparoscopies. So this continued on for another 10 years and in 1997, I was lucky enough to get pregnant to my daughter, [daughter’s name], and back then I was told that pregnancy could be a cure or that the endometriosis might kind of go into remission, if you like, after a pregnancy.

Well, that didn’t happen with me so in 2002 by that stage, after giving birth to [daughter’s name] in October 1997, I’d had further laparoscopies, operative for further diagnosis that had recurred. And in 2002 I decided that was enough. I was around 33 at the time and I had a hysterectomy and an oophorectomy, so removal of both ovaries as well. And that was designed to cure the endometriosis if you like. I also had eggs frozen at that stage in case I wanted to explore further conception options down the track. I was then pain free, which was awesome, for the first time in years and years and years. Yeah, so that was a really good outcome for me.

What perhaps wasn’t so good was the symptoms that went along with menopause, so things like hot flushes and dryness and all of those sorts of things. I went onto HRT not long after I had my hysterectomy and oophorectomy and they decreased the symptoms of the hot flushes and that sort of stuff, so that was great.

The stomach muscles just being – I was quite fit and healthy before that, like the night before my first surgery I was doing, you know, sit-ups and yoga in the lounge room, and then I just couldn’t move or walk. I stayed in hospital for five days until I was sent home and I was given one month to recover before chemo started which is very cruel because after a radical hysterectomy, you need at least six weeks before you start doing things. That’s what they call mine, a radical hysterectomy, because everything is taken out. I don’t have a cervix anymore either – that freaked me out when the doctor told me that. But I guess that’s good because it means the cancer, you know, is all gone. So the first time we talked about menopause was in the meetings leading up to this very rushed surgery and I didn’t care about menopause at all. It was the lowest concern on my list. But the surgeons and the oncologists were quite insistent about it being something I needed to think about. They wanted me to think about you know, what hormone replacement therapy I was going to do and the side effects I was going to experience straight after surgery.

Hodgkin’s lymphoma is a blood disease and it doesn’t have any links to your hormones at all. It’s not to do with oestrogen dominance or anything like that, or any of the breast cancers where you need to have certain drugs afterwards. It’s just that the high dose chemotherapy that is needed in a stem cell transplant is so strong, that it actually kills your entire immune system and kills off… well in 99% of cases really, kills off your ovarian function because the chemo is so strong.

I had a bilateral mastectomy with immediate reconstruction and during the chemo my periods had stopped and I experienced some symptoms of menopause, even though they didn’t officially diagnose me with that because chemo can bring on things like the hot flushes, the mood swings, no period at all. My official diagnosis of early menopause came after I had my oophorectomy. After the first operation, I had radiotherapy for five weeks and then once I had recovered from that I had the oophorectomy which was in May. Once I had that, of course, I was diagnosed with early menopause.

The reason I had my oophorectomy is mainly to prevent ovarian cancer. My mother had ovarian cancer and she had gene testing done when she was going through that. And it was discovered that she had the BRCA1 gene and I also had testing done whilst I was in treatment and it was discovered that I have the BRCA1 gene as well. So I felt that the likelihood of myself getting ovarian cancer was very high and, to be frank, even though it was low I would have wanted to be sure. I wanted to make sure that there wasn’t a chance that that was going to happen to me.

And I had already had my two children. We didn’t plan on having any more children. So for me I wasn’t worried at all about having an oophorectomy and the doctors had discussed the fact that this would bring on early menopause. And they had talked about the symptoms and what I would experience, which I was quite prepared for. I just basically wanted the worry gone. I wanted to do everything I could in my power to make sure I didn’t have to go through this again, everything within my power. So there’s no guarantees but this is an excellent way of ensuring [laughs] that there’s a big risk factor gone.

Also I take medication now, I take anastrozole which stops – as far as I understand [laughs] it stops the oestrogen production. And that actually increases – one of the side effects is it increases the symptoms of menopause. So the hot flushes and things like that, they can increase basically [laughs].

After I finished chemo, I noticed that my hot flushes and my night sweats and my joint aches were intense. I couldn’t work out whether it was just sort of chemo-based and radiation – I was still going through radiation. So I couldn’t work out, if it was that but then I was told that, because I’d had chemo, my ovaries had kind of gone into shut down and that it was probably likely that I was going through early menopause.

I think it was after the chemo when I started getting the physical symptoms. After a little while, they probably thought that – the chemo would have been out of my system so it wouldn’t be because of that. And then they told me that obviously starting ZOLADEX [goserelin] injections, which shut down your ovaries, and also I’m on an Aromatase Inhibitor, exemestane, which does the same thing, and that’s when you are kind of told, “Well this is probably menopause.”

See that’s the type of stuff that I don’t know. I have no idea and I think it will just be – I’ll have to find out but – and I’m not sure whether anyone would know that either. So I suppose it could happen, but, like I said, I’ll be early forties so I’m not sure whether it will or it won’t. And that’s just the unknown as well and then obviously that comes into a whole new thing of you’re probably fertile again. And if that does happen, I don’t want to get pregnant because the idea of having cancer again. So I guess there’s a whole lot of unknowns as well to do with early menopause and being on this medication.

I don’t think it will happen but I think my body is just – like, 10 years of this medication, of shutting it down. I just think that’s – it’s over. [Laughs].

Only fairly recently. Like, with ZOLADEX [goserelin], since I’ve been taking – that’s been two and a bit years. I think I’ve been interpreting it or they’ve been saying, I’m not sure, but more like, “You’ll be in a menopausal state,” but sort of implying if I stop taking the drug maybe my body would return to not being menopausal. So, maybe I’m technically, or maybe I am but only because of medicine. I don’t think I had thought through the boundaries of those terms.

In the lived experience of what I go through, I think it’s like what I would have gone through had none of this happened to me ten years – I think it is real menopause whether or not it counts or however it gets classified. Certainly there are concerns about bone density, about vitamin D, so I take vitamin D as well as the other drugs. They’re very concerned, but I’m happy to run and lift weights anyway, but they want me to do that sort of thing. I think I must be seen through a medical lens as being menopausal and I think that term has been used sometimes but I don’t remember it being used early on.

My periods have always actually been a bit irregular, which is kind of genetic because my mum’s the same. So I’ve always, I’ve never had the four week thing. It’s always been longer between periods for me. And, so there hasn’t really been a [laughs] normal thing to go on. But, I was still having periods. That was because I was on the pill actually at that point. [laughs] Sorry, I neglected to say that before [laughs] – so much is going on and it’s been a while since I stopped taking that.

After my initial diagnosis, they actually put me on the pill because at that point, they’d found that it seemed to have a bit of a protective effect. I was having quite regular periods because of that. But, then they, obviously when I had that surgery in 2013 we stopped the pill as well because there seemed to be a hormone thing involved and we thought it was better if we stopped that.

So, you know – and I mean, I’ve sort of said this to my specialist and he looks at me funny. But even though I was on the pill, I almost felt, like, in the lead up, when I had that last tumour growing – I almost felt like I had some menopausal symptoms. But I was on the pill. [laughs] So I don’t know whether that was in my head or whether something funny was going on and that ovary had shut down then, and the pill wasn’t fully compensating.

Because I was getting sort of some hot flushes and stuff then which was a bit weird. But yeah, when I say that to my specialist, he goes, “Oh, no, but you were taking the pill.” [laughs] I’m like, “Well, I don’t know.” [laughs] I haven’t brought it up for a while. It was just at the time and I think I only ever said it once and he was like, “Okay. Whatever.” [laughs

I was experiencing these menopausal symptoms with periods all over the place and hot flushes and that kind of stuff. Again I had another laparoscopy because I had a lot of pain on the left side again. The – I can’t remember the guy’s name; [doctor’s name] something, I went to the gynaecologist. When I said to him, “I think I’m going through menopause, early menopause,” he was just very dismissive and said, “You’re too young to be going through that.”

I said, “Yeah, but I was 25 when I got breast cancer so this whole too young to get these kind of things it doesn’t wash with me because anything can happen really. And why wouldn’t it be? I’ve only got one ovary.” So I was kind of – at this point I’m Googling stuff of course. And people say “Don’t do that,” but when you don’t get answers and the doctors are dismissive, of course you do. And I’d read somewhere that if you’d only ever had one ovary it does the job of two, of course – and from the age of 14 I’d only ever had one ovary and it did the job of two ovaries – until I was 37.

And so it seemed to me that that, that ovary had just completely conked out, or the surgery I’d had in February 2008 had caused some damage to the ovary and had cut off the blood supply or whatever. And that’s what prompted it – prompted the early menopause. This gynaecologist was very dismissive and said, “Oh, you’re not going through menopause. No, I’ve just operated and I’ve seen you had just ovulated, you know, a few weeks before anyway,” because he’d looked at the ovary and you can tell. But, like, I was still getting periods but it was just very on off, on off, all the time.

They wouldn’t come for months or they’d not show up at all for months, or then I’d get them and it was really heavy, then I’d get another one a week later. It was just completely all over the place. But when he was saying that it wasn’t menopause I just got more and more angry and frustrated. And then – he finally said, “Oh, I’ll do a blood test,” and he did a blood test just to shut me up basically. “All right, I’ll do a blood test,” he said rolling his eyes. And the blood test came back and I rang the office to get the results and I spoke to the receptionist and she said, “Oh, yes, you’re postmenopausal.”